Arizona's F2F HIC provides info, training & support to families statewide, connecting them to resources & systems for their CYSHCN. The program Fosters effective partnerships between parents & professionals by promoting understanding of medical home & family-centered, culturally competent care via workshops & tools while creating programs & publications to meet the particular challenges of YSCHN & NICU, rural & underserved families. Also, collaborating with state agencies to incorporate the family voice in their design of policies & programs that serve CYSHCN & families. The program uses a wide variety of education & outreach methods (CDs, website, parent volunteers, etc.) to deliver our info, & similar methods to assess our effectiveness.
Activities/Methodology:1) Provide 25 parents each with information on EI, ACA, community & state resources, peer support, Medical Home. 2) 250 families of diverse language/culture and on tribal lands each year have health care information, ACA and state/community resources provided by cultural brokers 3) Yearly: 4 statewide newsletters print/electronic circulation; 52 electronic Monday Memo e-news, maintain Health Care webpage; 125 parents training/information about services for CSHCN, communication/collaboration; annual conference collaborative strategies for EI, 4 workshops in rural/underserved/tribal lands 4) 30 parents each year receive peer support, information on child's health needs and services 5) 40 parents each year receive individual consultations on navigating systems and obtaining appropriate services 6) 30 families each year receive an organizer and training for managing child health records/forms 7) 50 physicians will have updated health information, Medical Home, ACA, family centered care, youth transition; cultural issues, state services for CSHCN 8) Provide information on CSHCN, 504 Plans, emergency preparedness through community outreach for health professionals, school nurses, community health centers and other appropriate entities.
Partners in Preparedness
Raising Special Kids has been participating in a statewide Emergency Preparedness workgroup called Partners in Preparedness, addressing access and functional needs, since 2012. Raising Special Kids’ role is to provide the perspective of families with children who have disabilities and complex medical needs. There are currently 21 community partners in the workgroup. We participated in the planning committee for the 2013 Statewide Partners in Preparedness Conference which 124 people attended, including emergency management personnel, public health staff, seven Native American tribes, and individuals and parents of children with disabilities. As a result of our work, the AZ Department of Emergency Management is forming a subcommittee to address the specific needs of children who are medically fragile. Though the Partners in Preparedness workgroup we are participating in the Arizona Department of Emergency Management Arizona Disability Assessment Program.